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Author
Topic: Facial lipo on Atripla (Read 27167 times)

hi,has anyone experienced facial lipo whilst on atripla? I've been on it for 4 months now.mainly i have a thinning of the face with deepening of the naso-labial folds.I have lost weight recently, from 72 to 67 kg.i just think it's best to flag this stuff early - easier to prevent than wait until it's too late to reverse.also what are the risks with changing meds only 4 months in? (this is my first treatment with meds, diagnosed in 2006)

I'm also about 4 months in and also experiencing facial lipoatrophy on Atripla. When I started everyone told me that Atripla was one of the safest drugs to be on for lipo issue, but after doing a lot of research lately i see that Sustiva in Atripla is one of the three main drugs now associated with lipo issues. I've got an appointment with my doctor tomorrow to switch treatments. If I had known about this I would have never have gone on Atripla and I've been freaking out to see my face deflating. Anyone know of the likelihood of reversal of early mild facial wasting? Or of any diet/supplement approaches to help combat it? I'm increasing my fiber and protein and started taking Coenzyme Q10 and L-carnitine, but am not really expecting much from them...

yes, i had weight loss but no facial wasting for the last year. now my weight is back up and my face is deflated. i'm sure you learned a lot over your years with hiv, but you should try to resist being a tyrant on the boards. a question was asked about anyone having experience with facial wasting on atripla and i answered in an honest fashion. i don't see why you feel the need to be condescending and hijack this thread. are you new to hiv and on atripla? no, you're not. why not let us discuss this in peace without you being a bully and trying to prove how much more you know than everyone else. there's a fairly significant population of people experiencing facial wasting on atripla and we don't need your disdain every time we try to post on the boards. the boards are for everyone.

there's a fairly significant population of people experiencing facial wasting on atripla

define "significant" as it is the preferred CDC treatment naive regimen BECAUSE it has the least chance of causing lipoatrophy. Please provide a link that there are loads of patients on Atripla as treatment naive patients experiencing lipo, and by that I mean lipo that has been clinically diagnosed by a service provider and not a self-diagnosis.

I'm sorry if my challenging your assertions qualifies as "bullying" -- but it doesn't. And my replying to your posts isn't a hijack by any definition. Sorry if you're feeling defensive though, as that's certainly not my intent.

yes, i had weight loss but no facial wasting for the last year. now my weight is back up and my face is deflated. i'm sure you learned a lot over your years with hiv, but you should try to resist being a tyrant on the boards. a question was asked about anyone having experience with facial wasting on atripla and i answered in an honest fashion. i don't see why you feel the need to be condescending and hijack this thread. are you new to hiv and on atripla? no, you're not. why not let us discuss this in peace without you being a bully and trying to prove how much more you know than everyone else. there's a fairly significant population of people experiencing facial wasting on atripla and we don't need your disdain every time we try to post on the boards. the boards are for everyone.

You need to lighten up and listen to those who have more experience with meds than you do, Miss P and those like him are the people who are going to help you through any problems you may have in the future..I'd think twice about how you treat/talk to those who are here to support and help you.

this whole taking sides and defending those who are first to go on the attack is just silly, worthless playground behavior. if you're not going to add something substantive to the issue at hand, perhaps you should resist posting. i'm sure miss p. can defend herself without the pile on from all her playground friends. this discussion is about facial wasting on atripla. know something about it? then post. there are too many of these threads now with too many of you puffing up your chests for no reason. i'm done responding after this post. you all do a major disservice to the hiv community by being more interested in acting like you're on a reality tv show with forming your alliances, than actually trying to get to the truth of issues that really effect people.

btw, i think that 11% of people having lipo issues on one of the most prescribed hiv drugs on the market, is a significant number.

So yes, your chances of experiencing lipoatrophy are going to be lower, but I'm still hearing from recently diagnosed people taking Atripla [efavirenz/tenofovir/FTC], or a very, very lipid-friendly combination, that are experiencing body changes.

A study done by the ACTG [AIDS Clinical Trials Group] actually showed that 11 percent of people taking tenofovir, 3TC [Epivir, lamivudine] and Sustiva [efavirenz, Stocrin] experience lipoatrophy. That's 11 percent of people who have never been exposed to AZT or d4T, so there is a minority of patients that may have lipoatrophy even though they have never been exposed to the main culprits of this problem.

A study done by the ACTG [AIDS Clinical Trials Group] actually showed that 11 percent of people taking tenofovir, 3TC [Epivir, lamivudine] and Sustiva [efavirenz, Stocrin] experience lipoatrophy. That's 11 percent of people who have never been exposed to AZT or d4T, so there is a minority of patients that may have lipoatrophy even though they have never been exposed to the main culprits of this problem.

Actually the study stated 9%, not 11% -- and keep in mind this is ONE study done three years ago. Do you know of any more studies, ones that take an analysis into account of those experiencing lipo in this 9% small group their lowest (nadir) cd4 count before and/or during treatment? This was not done in the AIDS Clinical Trials Group study, a point mentioned in one of your previous poz.com links authored by Tim Horn.

I hate to tell you, but you're not going to find a single HIV regimen that comes with an iron clad guarantee that you will have no body shape changes -- never. You can only go with the combos that represent the least exposure.

Are you willing to post some before and after photos of what you are experiencing? You know, we can often be our worst judges of this issue. At any rate, and for your sake, I hope I'm right and you're wrong -- meaning that you aren't in fact experiencing lipoatrophy. I don't take this issue lightly at all, as I just had my third injection session of Sculptra just last Thursday, with one more session to go next month.

Fellow newbies-its no secret that the "new drugs" cause lipo. One need not memorize medical statistics or rely on doctors, who are notorious for dismissing the complaints of pozzies, to see this. You only need to look at a large collection of people who've been on the "new meds" for a few years to see that this is plainly the case. To both of you, I'd remind you that four months is a record-setting timeframe for the development of the disorder, and I'd suggest that weight loss, aging and increased facial scrutiny are probably the culprits. I would also read the studies more closely. SUSTIVA is highly correllated with facial lipoatrophy, but hasn't been studied by itself. All these studies involve combinations of medications, so it is unrealistic to say that SUSTIVA causes lipo so much as SUSTIVA in combination with other meds is highly correllated with it. The particular combination of Sustiva with Truvada (Atripla) is known to result in a very low incidence of lipo. Further, if we're on the same page, the study you cite with 9 or 11 (I remember 12)% lipo with Atripla has a very low threshold for what they define as lipoatrophy and is culled over the course of two years, not four months. Criticisms of the study state that the threshhold for defining facial changes as lipo is so sensitive that the researchers may actually be witnessing normal aging.

Before I started, I took pictures of my face to have an objective source of information to compare it to, and I'd recommend you guys to do the same. Staring in the mirror and wondering if you're imaging a symptom is bound to increase the liklihood of you perceiving that symptom.

I have had four HIV infectious disease doctors over 17 years and not a single one of them has ever been dismissive about my lipoatrophy issues. If they're dismissive it's probably because they don't agree with the patient's self-diagnosis.

I have had four HIV infectious disease doctors over 17 years and not a single one of them has ever been dismissive about my lipoatrophy issues. If they're dismissive it's probably because they don't agree with the patient's self-diagnosis.

Ohhhhhhh... YOU've had ____ experience with HIV and therefore _____ must be true because no one else's experience could POSSIBLY be different! SOOOOO gooooood to KNOW!!!

Thanks guys for the responses. I agree that both normal ageing and weight loss can cause facial changes - I think the issue is that if you leave it too long to change meds then the lipo changes are irreversible and it is best to be informed. This discussion has helped me a little, I think. What you are saying is that Atripla is probably one of the best combos as far as facial lipo is concerned. Which is probably what my GP will say, and when he examines my face he will also say the changes are more than likely just normal ageing.The photo tip is really helpful - I can see that this is prob the best hard evidence.

If we did decide that changes were occurring is there a combo which is indicated as an alternative? And what are the issues with drug resistance re changing combos 6 months into a course?

By the way, when we're talking about fat redistribution, has anyone else experienced lipomas on the side of their spine? My partner has had a couple, one large-ish (1/2 cm) and I am getting one which is slowly getting bigger.

I can hear some of you saying "it's just your imagination" but I seem to recall reading somewhere that this is not uncommon.What are your experiences?I know tha a lipoma is not a malignancy but it did cause some anxiety recently with my partner who has just completed cancer treatment, and we were excluding spread.

The best I can do is say that someone here once linked to an article from thebody.com which claimed that isentress/truvada was "the best" combo to be on, but the particular article seemed to either address "lipid issues"...which could include cholesterol levels, or lipidysTROPHY, which could include lipoHYPERTROPHY, as opposed to lipoATROPHY, which is what you're afraid of. When people discuss their concerns for "lipo", they usuaully mean facial wasting, and specifically lipoatrophy of the face where fat deposits are depleted from areas like the cheeks. Lipohypertrophy is, if i recall correctly, the unusual depositing of fat in various areas. This hasn't been studied as much with Atripla. Before you jump on the isentress bandwagon, I'd advise you that its pretty untested, even by the standards of HIV drugs and hasn't received anywhere near the degree of scrutiny that atripla has, so whatever contest it wins, it kinda wins by default. The unfortunant truth is that HIV treatment is a balancing act between the drugs and the effects of the virus, with the former literally having the distinction of being better than a fatal disease, and not much else. Its a good idea to use the meds, and I personally am glad I started early, but make no mistake---you're not popping pez.

Philly was right when she said that none of the treatments are free of side effects. I'd choose now as a good time to advocate for a change in the paradigm. Write your local politician, have your firends, family and everyone you know who cares do the same and urge them to fund research for a cure.

The unfortunant truth is that HIV treatment is a balancing act between the drugs and the effects of the virus, with the former literally having the distinction of being better than a fatal disease, and not much else. Its a good idea to use the meds, and I personally am glad I started early, but make no mistake---you're not popping pez.

I know I've typed out basically this same response before. It's been a while though.

If I ganked plagiarized your phrase, I apologize. You've been on Atripla for a while, haven't you? What are your thoughts on the subject?

Frankly? I call shenanigans on anyone thinking that within 4 months they've developed any sort of lipo issues from HIV meds. Now maybe having developed them from the HIV itself? That's a different story seeing as they could've had HIV for a really long time. Atripla from personal experience has caused some weight issues, but I think that saying without a doubt Atripla is causing him lipo issues is unproven.

I posted recently though that I'm beginning to have some sides from what I would assume is the atripla because I'm starting to have some severe anxiety.

As for plagiarizing me, I'm not the only one who's said that and I'm more curious to know when exactly I espoused it.

Tim, this is exactly what people are referring to when they complain about moderator favoritism. You should have just as well warned philly for being consistently dismissive of other members feelings and experiences as the way I chose to point it out and counter it.

My post wasn't at all dismissive. I merely offered an opinion that based on many years of medical care, and not with the same doctor but four of them, that I have had a marked difference with how medical professionals address the issue of lipoatrophy. This is completely relevant to the thread's subject.

Tim, nor Ann, play favorites with me -- I've received warnings and two time outs in the past. If you have a personal issue with me and/or have a marked dislike please wisely utilize the "ignore" button and don't read my posts. That's your prerogative and why that function exists.

Tim, this is exactly what people are referring to when they complain about moderator favoritism. You should have just as well warned philly for being consistently dismissive of other members feelings and experiences as the way I chose to point it out and counter it.

As Philly points out, his posts were not dismissive. He was offering his opinion based on years of experience.

As Tim said, you could have simply expressed your own opinion that you disagreed with what Philly said. But what you did was the cyber equivalent to poking him in the chest with your finger while you stated your opinion. You certainly were pot-stirring and trying to provoke an angry response. That much is quite clear.

And that was pretty rich coming from you, someone who complains about this type of behaviour from others.

"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Why would you be sharing "your experience" in this instance but to delegitimize and subtract from a claim that was already made? You certainly weren't providing your experience to give moral or emotional support. Nor were you using your experience to provide a concrete example of how to handle a problem. You were only using it as a way to trump something I had said, namely that doctors have a history of being dismissive.

I don't block you because, frankly, as offensive as you can sometimes be, I find a lot of the things you write to be smart and meaningful. There are plenty of members whose contributions I've found to be meaningless, and they have been placed on block. They still usually respond to my post two or three posts at a time or attack in packs, but editing them from the discourse I experience has made things a lot nicer, and whole threads flow smoothely even after their posts have been abruptly removed. I don't think that would happen without you. I'm not going to sit by in wide-eyed deference as you subtlely put down myself or other members on here by citing your own personal experience in a context that is clearly meant to take away from our opinions. If calling you out on this tendency is "stirring the pot" then maybe I should have thought of the name spoon first.

To those of you with your mouse fingers currently fluttering away at the "report to moderator" button with some half-cocked explanation as to how this offends you, I kindly ask that you direct your energies towards something more productive than having certain members banned for nothing at all. There is so much work that needs done in HIV, from advocating for a cure to the provision of meds. Do something positive with your life, besides letting Tim Horn know that I responded with something other than polite deference to Phillicias dismissal of other people.

And that was pretty rich coming from you, someone who complains about this type of behaviour from others.

Consider yourself warned.

Ann

there was ONE instance in which I complained about a member inciting me. Unlike this thread, the member had jumped in without reason AND you conspicuously declined to publicly warn him. My complaint was ONLY that he got away with provoking me while I was banned for responding to his harsh statements. You're just further demonstrating moderator bias here Anne.

hi,has anyone experienced facial lipo whilst on atripla? I've been on it for 4 months now.mainly i have a thinning of the face with deepening of the naso-labial folds.I have lost weight recently, from 72 to 67 kg.i just think it's best to flag this stuff early - easier to prevent than wait until it's too late to reverse.also what are the risks with changing meds only 4 months in? (this is my first treatment with meds, diagnosed in 2006)

You also have to keep in mind that those naso-labial folds begin to become more pronounced around the age of 40, experienced some of this myself actually. I've just noticed you were 35, it might be something to keep in mind.

Thanks for your thoughts - yep I really really want a cure for this disease and think the only way we can do this is lobby and push for it - until funding stops going towards more treatment / prevention / etc and goes towards the woefully underfunded area of cure research.

I did post a question asking for the best charity to donate towards for cure research but didn't get very far.

Maybe there is no such charity with a cure for a specific goal?

From my own point of view, I came to this forum to ask some questions - from fellow poz people. My experience with my GP is that he is often not very forthcoming when I ask him questions. I feel like he thinks I am questioning his experience and his treatment decisions, even though I respect him and his years of experience. It is me, however, who must take the meds on a daily basis and will suffer any side-effects, though, so being as informed as possible seems the best way.

I have had mega mega anxiety since starting Atripla - in some ways this is from being in denial from diagnosis 4 years ago to starting meds 4 months ago. On top of this, my partner was diagnosed with cancer recently, which has added to the stress. But I also realise that Atripla can exacerbate psychiatric problems such as depression.

I am getting this seen to with a psychiatrist and psychologist but am resisting going onto anti-depressants - hopefully I can get my stuff together soon. I don't want MORE meds in my system.

I know changing meds is also an option due to the psychiatric side effects, but I would sort of feel like I was taking a backwards step.

My current thinking is wait and see and try not to crumble in the meantime. I have a loving partner and today came out as poz to my brother which might help too.

I have had mega mega anxiety since starting Atripla - in some ways this is from being in denial from diagnosis 4 years ago to starting meds 4 months ago. On top of this, my partner was diagnosed with cancer recently, which has added to the stress. But I also realise that Atripla can exacerbate psychiatric problems such as depression.

I am getting this seen to with a psychiatrist and psychologist but am resisting going onto anti-depressants - hopefully I can get my stuff together soon. I don't want MORE meds in my system.

I know changing meds is also an option due to the psychiatric side effects, but I would sort of feel like I was taking a backwards step.

You know.... there's this whole menu of HAART drugs that can keep the virus under control. Some are prescribed as a single pill; some in multiple pills -- some are once a day; some twice -- some (like Atripla) are best coordinated around when you eat; others are not. And they all have potential side effects. But the good thing is that those side effects are often only potential; some people get them and some do not.

So instead of thinking that changing Atripla would be a step back, why not think of it as a step forward? As in. you've got a combo that works and now you'd like a combo that works and doesn't make you nuts? And since the only component you need to change is the sustiva part of Atripla, perhaps you could talk to your doctor about what s/he thinks combines well and conveniently with Truvada.

Truvada/Isentress for instance is a very easy combo for most (although not for me) -- even though it is twice a day, because the second pill is heat stable and doesn't need to be coordinated with meals, you can just put it in your pocket and take it where-ever you happen to be at the right time.

Thanks for your thoughts - yep I really really want a cure for this disease and think the only way we can do this is lobby and push for it - until funding stops going towards more treatment / prevention / etc and goes towards the woefully underfunded area of cure research.

I recently talked to Kate Krauss, who is the executive director of the Aids Policy Project, a group which lobbies for a cure for HIV. One of the first things she stated was that it is important to NOT take away from funding for things like treatment, prevention, vaccine research, etc. I realize that this is a little hard for people wanting a cure to stomach, but when you think about it, it is the MOST logical way to go about attacking the issue. Like anything, the HIV complex is a bureaucracy and those in it are interested in protecting their jobs. The moment you start advocating for the allocation of funds AWAY from one thing in favor of another, you start advocating the elimination of people's jobs and you make enemies. Further, if something like a vaccine is in fact possible and a cure is not, you do harm to countless millions of people who will some day become infected. The focus should be on increasing funding for a cure without necessarily taking away from other parts of the puzzle.

As for which charity is best to donate to, that is a question I've been asking myself. It appears that the vast majority of HIV research relies almost exlusively on institutional and government and grants. Unlike, say, the Komen foundation which seems to channel large sums of money from small private and individual sources resulting in a big effect, there IS no way to get your individual donation to the scientists that need it. This is really too bad, because a lot of what these people need is a pittance. It seems to me that if every pozzie in the US donated just a few dollars, we could fund some of the most promising research opportunities that are stalled by a lack of funding. Kate recommended a letter writing campaign to your senator and local representative as a good start. What state/country do you live in?

I would love to elaborate on this discussion. The activism forum is the correct place for it. If you'd like, I'd be more than happy to start a thread over there and we could discuss options for making the best move possible.

Wait Im lost.... So does Atripla have a high chance or developing lipo/facial lipo or not? The thread went of topic so I'm unsure. I tried looking at another threads but the results are mixed. I may be starting atripla soon but REALLY concerned about the fat changes.

Are there are studies where I can read about Atripla and the rate of lipo? Thanks,

I have no idea what percentage of people develop lipo on Atripla. However, I just received my refill for Atripla and I was reading the medication insert that came with the meds. Under the section of "Possible side effects while using this medicine"

it states "CHANGES IN BODY FAT (eg, an increased amount of fat in the upper back, neck, breast, and trunk, and loss of fat from the legs, arms, and face) may occur in some patients while taking this medicine.

ALso to note...the capitalization was not me. Thats how its written in the insert. All the other side effects are in lower case except for changes in body fat, thats in all caps.

I have no idea what percentage of people develop lipo on Atripla. However, I just received my refill for Atripla and I was reading the medication insert that came with the meds. Under the section of "Possible side effects while using this medicine"

it states "CHANGES IN BODY FAT (eg, an increased amount of fat in the upper back, neck, breast, and trunk, and loss of fat from the legs, arms, and face) may occur in some patients while taking this medicine.

ALso to note...the capitalization was not me. Thats how its written in the insert. All the other side effects are in lower case except for changes in body fat, thats in all caps.

Study the possibility of lipo with your doctor and over time with some sort of objective evaluation - not just your own observation and fears.

Yes, people can usually switch combos, except in cases where only one combo works on a resistant infection.

I think the heated tone is the result of people not wanting a baseless fear of rapid lipo being spread in these forums.

People can have all sorts of body image fears about HIV and HAART but these possible complications are so individual its best to put it to doctors trained to sort it out objectively. If you think a doctor is poo-pooing a fear or an observation, thats an opportunity for a second opinion AND for some soul-searching about one's own fears and body issues and ones relationship with a particular doctor.

There's always a very important reason someone is started on HAART and the key to successful living is dealing with the essentials now, and the good stuff now, and only dealing with complications as they arise.

Fears of "what if" are not going to help anyone whatsoever.

« Last Edit: March 26, 2011, 07:07:23 PM by mecch »

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ďFrom each, according to his ability; to each, according to his needĒ 1875 K Marx

I've been on a cocktail containing efavirenz since 2001 ( I believe it was 2001) and I was afraid of the lipo issue myself.

I did my research and found that one of the keys to the lipo issue is exercise.

What I read was the Lipo is actually a RE-DISTRIBUTION of fat in the subcutaneous layer of the skin. Fat can be migrated from medicines, but it can also be migrated from exercise.

By working out and exercising regularly you can not only build muscle mass which damn good on a body, but you can also help "force" the fat to remain in place.

I wish I could cite article I read, but it was years ago when I was also concerned with facial wasting.

If you want more info on it, google excercise and lipo, or a variation there of.

I have never experienced lipo, however, that may be because I exercise regularly and eat a low greasy diet.

I hope this helps!

Lipoatrophy is believed to be caused by damage to the mitochondria at the cellular level.

This is from the lessons here:

Quote

Mitochondria are considered to be the "powerhouses" of cells in the body. All cells in the body, with the exception of red blood cells, contain mitochondria. They are primarily responsible for converting nutrients, such as sugar and fats, into energy that can be used by the cells. If something goes wrong with the mitochondria, the cell isn't able to get the energy it needs, which can prevent the cell from doing what it is supposed to do. If the cells in question are fat cells (adipocytes), responsible for storing and exporting fat for when it is needed, significant mitochondrial damage can cause these cells to loose both their function and shape, or to die altogether. And if enough fat cells are affected, it can cause noticeable wasting of fat tissue in the face and other parts of the body.

While exercise is certainly good for you, and it can help offset fat loss in arms and legs by building up muscle and giving someone that "cut" look bodybuilders prize, it won't stop the process of lipoatriphy.